This gathering in Canada reminds me that it was my own diagnosis with Parkinson's disease four years ago that launched this blog. It was a diagnosis that took some time in coming.
Before my PD was on anybody's radar, I was aware of several new physical developments:
- My right arm wasn’t swinging normally, freely, when I walked.
- My balance seemed less steady.
- My sense of smell had practically disappeared.
My experience underlines the importance of being informed, and acting as one’s own wellness CEO. If I had known then what I do now, well . . . I could have made the diagnosis myself. But I didn’t know; most new PD patients don’t. Why should we?
There’s another question here, too. Would an earlier diagnosis have improved anything for me? As it is, I feel awfully lucky that my PD "honeymoon" lingers; I was able to savor five weeks of intense travel with family in Europe this summer, and I'm feeling very easy about the trip next week. Still, the Parkinson's Health site suggests that early diagnosis DOES matter:
People with Parkinson’s disease may lose up to 80% of dopamine in their bodies before symptoms appear. In addition, special imaging tests of the brain show that dopamine may decline as much as 10% per year in people with Parkinson’s disease. Early diagnosis and treatment are important to help minimize dopamine loss in the brain and maintain muscle function.That same website describes PD symptoms by stages, with this caution: "The following symptoms are common among people with Parkinson’s disease, but the symptoms of the disease can vary widely and are unique to each individual."
Many people, perhaps including my former internist, aren't aware that some people with Parkinson's don't have the tremor that's regarded as a hallmark of the disease. I'm sure that's one reason for the delay in diagnosing my PD.
Early Stage Symptoms:
- Tremor on one side of the body when at rest
- Arm swing on only one side of the body when walking
- Muscle stiffness or aching
- Slowness of movement
- Small handwriting (microphagia)
- Decreased facial expression
- Depression (sadness or anxiousness)
- Vivid dreams or restless sleep
- Feelings of fatigue
- Tremor on both sides of the body
- Shuffling gait
- Difficulty rising from a chair
- Reduced speech volume (hypophonia)
- Reduced speed and clarity of speech (hypokinetic dysarthria)
- Significant changes in, or freezing of, gait
- Increased risk of serious injury from falling
- Unpredictable response to medication
- Assistance required for activities of daily living
- Difficulty turning in bed
- Slowness of thought (bradyphrenia)
If anyone has helped spread the word -- and fuel the research -- about Parkinson's, it's Michael J. Fox. (Last night, his new TV show -- in which he plays an upbeat PWP -- premiered.) The Michael J. Fox Foundation for Parkinson’s Research website explains the more common PD symptoms, and adds:
There is also increasing recognition of the importance of other Parkinson’s disease symptoms that are sometimes called "non-motor" or "dopamine non-responsive." While neither of these terms is ideal, these symptoms are common and can have a major impact on Parkinson’s patients. For example, cognitive impairment, ranging from mild memory difficulties to dementia, and mood disorders, such as depression and anxiety, occur frequently. Also common are sleep difficulties, loss of sense of smell, constipation, speech and swallowing problems, unexplained pains, drooling and low blood pressure when standing.Then there's the alert we see so often:
Parkinson's disease symptoms manifest differently in different patients. Many patients experience some symptoms and not others, and even the pace at which the disease worsens varies from person to person.The WebMD site -- a favorite -- lists these symptoms:
- Decreased dexterity and coordination. Changes in handwriting are common, with writing becoming smaller. Athletic abilities decline, and daily activities such as dressing and eating become harder.
- Cramps in the muscles and joints.
- Oily skin or increased dandruff.
- Digestive and urinary problems. Constipation is common. Controlling urination may be difficult, and urination may be frequent and at times urgent. Drugs used to treat Parkinson's disease may help or may sometimes make these symptoms worse.
- Problems with involuntary or automatic body functions, such as increased sweating, low blood pressure when the person stands up (orthostatic hypotension), and problems with sexual function. These symptoms may also be caused by Parkinson's-plus conditions or drugs used to treat Parkinson's disease.
- Freezing, a sudden, brief inability to move. It most often affects walking.
- Problems with sleep, mood, and thought also are common in people who have Parkinson's disease.
- Problems falling asleep or staying asleep (insomnia) can result from anxiety, depression or physical restlessness. People with Parkinson's disease may not be able to sleep well because they cannot easily turn over or change position in bed.
- A person with Parkinson's disease may slowly become more dependent, fearful, indecisive, and passive. The person may talk less often than he or she used to, withdraw from family and friends, and remain inactive unless encouraged to move about. Depression is very common in people with this disease and can be caused by chemical changes in the brain or can be a reaction to having a disabling disease. Depression often improves with proper treatment.
- Up to one-third of people with Parkinson's disease may develop dementia and confusion, similar to Alzheimer's disease, late in the course of the disease. Depression can further contribute to memory loss and confusion. Memory loss, hallucinations (seeing or hearing things that aren't really there), and vivid dreams may sometimes be caused by drugs taken to treat Parkinson's disease.